Hi, my name is Elizabeth, aka msGuidedbits. I have had relapsing/remitting multiple sclerosis for nearly 16 years. It’s been a 15 year struggle; out of two disabling relapses, through fatigue, and managing encroaching numbness. I used to pretty much keep my MS under wraps. I would largely avoid social interactions because I was afraid of people seeing my symptoms. After a relapse last year left me using my cane again, I was heartened by Selma Blair’s courage to come out with her MS diagnosis. I decided to come out of the shadows and start sharing. I also chose to start on Ocrevus. Ocrevus helped me stop the downward spiral of my last relapse. Then I raised my hand to participate in a clinical trial for the remyelination drug elezanumab. It’s a new hopeful regenerative pharmaceutical in the brave new world of Restorative MS Medication.
I am going for my fifth infusion tomorrow. I have been getting messages from MS warriors expressing interest in my progress on the trial and wishing me luck, even thanking me. Thank you all so much! Your support makes me feel hopeful on those hard days. There are still those days I do not feel well. There has been a relapse scare, a month of vertigo and MS Hug. It made me question whether or not to remain in the trial. Before I got into this, I did some research. Here’s a little background on the information that led me to participate in the trial.
The information below is from the American Academy of Neurology. It details the phase 1, double- placebo-controlled trial of elezanumab for safety. It discusses the way the medication is thought to neutralize to some extent a molecule that prevents the regeneration of myelin. I’m not a medical professional- listed here is the material from the article:
Elezanumab is a fully humanized monocolonial antibody directed against repulsive guidance molecule A (RGMa). Elezanumab is a fully humanized monoclonal antibody . Studies in patients with multiple sclerosis (MS) demonstrate RGMa upregulation, which inhibits axonal growth and myelination, oligodendroglial regeneration and functional recovery after trauma or inflammation.
Elezanumab treatment promoted axon regeneration, neuroprotection, remyelination, and immune modulation in several MS-relevant preclinical models. Elezanumab was previously well-tolerated as a single dose to healthy volunteers.
Design/Methods: In this phase 1, double-blind, placebo-controlled, randomized, escalating multiple-dose 29-week study, patients were randomized into 3 treatment groups (150 mg, 600 mg, and 1800 mg elezanumab) and 1 placebo group. Of the 20 patients enrolled, 18 had relapsing-remitting MS and 2 had secondary progressive MS. Elezanumab doses were given intravenously every 4 weeks for a total of 4 doses, with a loading dose of double the maintenance dose given on Day 1. Assessments included adverse events (AEs), cerebral spinal fluid (CSF) and plasma biomarker analysis, and Expanded Disability Status Score (EDSS). Subsequently, magnetic resonance imaging and serum pharmacokinetics data will be reported.Adam Ziemann, Matthew Rosebraugh, Bruce Barger, Bruce Cree
Going over this information I noticed something key that I missed. There was only a total of four doses given in phase 1. That means I have already received the fourth dose. This dose, number five, is completely uncharted territory. Though there was no noticeable improvement in patients in trial 1, they do a fifth infusion. Until my fourth dose I actually felt worse after the dose. Then something changed. This makes me excited for dose number five. The outcome is unwritten and I am going to be part of finding what that outcome is. I have eight more infusions to go. Will elezanumab allow for axonal regrowth, remyelination, olidendricite regeneration, and functional recovery?!? Basically, will my symptoms improve? Will my numbness lessen? Will it get easier to turn my neck? Will I continue to notice cognitive improvement?
I realized, being part of this trial, this is our chance. If we follow the MS research, if we become participants in it, the research won’t be being done behind a curtain but before our eyes. In my case, the research is being done within my body. Ten years ago some people with MS tended to turned to and put trust in anecdotal accounts of improvement. I was one of them. I felt the pharmaseutical industry had failed me. I have changed my mind because I found a medication that actually helped me. If a drug really works we can have both, anecdotal experiences from real patients and data backed up by clinical trials. It’s an exciting time in MS research and it’s a pivotal time in MS culture and awareness. The movement is growing and pharmaceutical companies are working with patients to move towards a cure. Maybe we can do this together.
I would really appreciate your thoughts as I go into this. Now that the fifth infusion is tomorrow, I’m starting to feel the butterflies in my stomach. I’m not out of the woods yet. Safety issues may still occur. However the hope is stronger. That this might work for me, and keep getting studied and go on to help everyone with MS. So if your religious say a little prayer for all of us. If your not religious, thoughts are also welcome. Thank you so much for going on this journey with me. I’m going to give an update on Thursday on Damian Washington’s Vlog, No Stress MS, with a live interview. Please join us!